Nevada Central Cancer Registry

Luana J. Ritch, PhDBureau Chief

Alicia Chancellor Hansen, MSChief Biostatistician

Juanamarie HarrisNevada Central Cancer Registry Program Manager

What is a Cancer Registry?

“State-based cancer registries are data systems that collect, manage, and analyze data about cancer cases and cancer deaths. In each state, medical facilities (including hospitals, physicians' offices, therapeutic radiation facilities, freestanding surgical centers, and pathology laboratories) report these data to a central cancer registry.”

http://www.cdc.gov/cancer/npcr/about.htm

Population Based, Retrospective Data Collection

Allows for capturing diagnosis, as well as initial treatment information

National requirements for reporting

Within 24 months from year of diagnosis

Registries do not track incidence as diagnoses occur

Cannot be used to identify cancer clusters

Not real-time data

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Nevada Central Cancer Registry (NCCR)

Established and governed by NRS and NAC 457

Primary purpose

Collect, register, and maintain a record of reportable cases of cancer occurring in the state

Uses of the data

Evaluate the appropriateness of measures for the prevention and control of cancer

To conduct comprehensive epidemiological surveys of cancer and cancer related deaths

De-identified data reported to Centers for Disease Control and Prevention (CDC) National Program of Cancer Registries (NPCR) and North American Association of Central Cancer Registries (NAACCR)

Reporting began in 1995

NCCR Website

http://www.health.nv.gov/VS_NVCancerRegistry.htm

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How Data Is Collected

Abstracting

State

NCCR Cancer Registrars visit facilities and abstract cases

Hospitals and Other Facilities

Facility Cancer Registrars abstract cases and submit information to the NCCR

Pathology Labs

Pathology reports sent to NCCR for case finding and supporting information

Information from all sources is consolidated

Final comprehensive case is reported to NPCR and NAACCR

Data sharing with other states

Reports received from other state registries of diagnosis and treatment information for Nevada Residents

Reports sent to other state registries for their residents who are diagnosed or treated in Nevada

Formal written agreements with 11 states, including all surrounding states

NPCR Data Exchange Requirements

Written agreements

Confidentiality

Data transmitted securely

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National Standards for Data Quality and Completeness

NAACCR

Gold Standard Certification for 7 of Past 8 Years!Gold Standard Certification for 7 of Past 8 Years!

Gold Standard Requirements

Percent completeness of case ascertainment: At least 95%

Percent missing/unknown race: Less than 3%

Percent missing/unknown sex, age and county: Less than 2%

Percent of cases death certificate only: Less than 3%

Duplicate cases: Less than 1 per 1,000

Percent passing quality control edits: 100%

CDC NPCR

In compliance with grant reporting requirements

Goals

24 month completeness: 95%

12 month completeness: 90%

Percent passing quality control edits: 100%

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Linkages With Other Programs

State Office of Vital Records

Case finding

Death Certificate Only Cases

Survival Information

Demographic information updates

Grant requirement

Hospital Discharge Data

Case finding

Supporting Information

Women’s Health Connection (WHC) – Breast and Cervical Cancer Early Detection Program

Benefits both programs

Case finding for NCCR

Treatment information for WHC

Grant requirement

Indian Health Services – US Department of Health and Human Services

Improve estimates of cancer incidence among American Indian / Alaska Natives (AI/ANs)

Improve the quality of cancer surveillance data for AI/ANs in NPCR registries

Supports CDC goal to eliminate racial and ethnic health disparities

Cancer incidence data for AI/ANs included in United States Cancer Statistics (USCS) annually

Grant requirement

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Value of the Data

Identify areas where Nevada differs from the rest of the country

Identify burden of disease and disparities

Allows prevention programs to target interventions

Information for policy development

Evaluation of program outcomes

Due to consistent high quality of Nevada data, information is included in nationally published statistics

Research

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Case Data –2008

Just completed Annual Call for Data!

Total 2008 Cases Reported to NPCR and NAACCR

12,321 cases

Highest number of cases ever reported

Males – 6,415 cases

Females – 5,900 cases

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Age-Adjusted Cancer Incidence Rates by Gender and Race/Ethnicity – Nevada, Preliminary 2008

Note: Excludes in situ cases, except urinary bladder. Data are not final and are subject to change.

Top 5 Cancers by Percentage of Incidence – Nevada, Preliminary 2008

Note: Excludes in situ cases, except urinary bladder. Data are not final and are subject to change.

Age-Adjusted Cancer Incidence Rates by County of Residence – Nevada, Preliminary 2004-2008

Note: Excludes in situ cases, except urinary bladder. Data are not final and are subject to change.

Uses of Incidence Data

Program Planning and Evaluation

State Cancer Plan, NV Cancer Coalition

Grant Requests

Presentations

Reports

Research

Hospital Planning and Treatment Evaluation

Media

Others…

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Uses of Incidence Data cont.

Cancer Clusters Incidence data not useful for identifying

clusters due to time lag required in data collection to acquire treatment data

CDC Environmental Hazards and Health Effects – Cancer Clustershttp://www.cdc.gov/nceh/clusters/

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Accessing Cancer Data

Report on Cancer in Nevada: 2001-2005

http://www.health.nv.gov/Cancer/NevadaCancerReport_2001- 2005_FINAL_09132010.pdf

CDC NPCR

http://www.cdc.gov/cancer/npcr/

United States Cancer Statistics (USCS)

http://apps.nccd.cdc.gov/uscs/

NAACCR

http://www.naaccr.org/

Cancer in North America

CINA+ Online

http://www.cancer-rates.info/naaccr/

CINA Publications

http://www.naaccr.org/index.asp?Col_SectionKey=11&Col_ContentID=50

National Cancer Institute (NCI) Surveillance, Epidemiology and End Results (SEER) Program

http://www.seer.cancer.gov/

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Future Plans

Future Linkages

National Death Index

Social Security Death Index

Web enabled reporting for facilities

Geocoding of data

Build infrastructure

Information technology

Data analysis

Data quality control

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Future Opportunities

Further focused data analysis

Integrate cancer data with other health related data in a Data Warehouse

Allow additional queries revealing where public health efforts should be focused

Existing programs can utilize information to target interventions

Improve outcomes for Nevadans

Many possibilities for what can be done with the data

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